Depakene - 1 ml, 3x a day
Dilantin - 1 ml, 2x a day
Phenobarbital, 30 mg tab, once a day
I was beginning to fear what damages these medicines might do my baby's liver, or kidney, he's just 4 months old and he's already taking too much medicine, but I wouldn't dare not administering any of them because of the risks that the seizures would come back.
A few days after we were discharged, we decided to bring Eon to Davao for him to be checked by Dr. Agbisit, the Child Neurologist. We wanted her opinion about Dr. Decolongon's suspicion that Eon might have Microcephaly. We would also take him to another Child Neurologist, Dr. Acosta, for a 3rd opinion. My brother in law volunteered to drive us to Davao and we were thankful because we didn't have to take the bus.
Dr. Agbisit was not available so we went straight to Dr. Acosta. We showed her Eon's CT Scan results and she wasn't convinced that Eon has Microcephaly, but she has another suspicion. She said that due to the shape of Eon's head, it was more likely that he has a condition called "Craniosynostosis", it's a condition where there is early or premature fusion of the fontanelles which causes the head to be deformed and the brain would not have room enough to grow, which in turn would be the cause of Microcephaly.
Dr. Acosta ordered another Cranial CT-Scan, but this time it has to be with contrast, which means that a contrast agent - a dye, is going to be administered intravenously to Eon to highlight his brain including the bone structure to see if there is indeed a premature fusion of the fontanelles. This type of CT-Scan costs double than the one without the contrast. Dr. Acosta also started to taper his intake of Dilantin, reducing the dosage on a weekly basis, and in a month, Eon wouldn't have to take the drug anymore.
That same day, we went home to Gensan figuring out our next move. We decided to go back in a month for his CT-Scan because we still have to find the funds for that. I started to research on Craniosynostosis on the internet and found that a lot of Cranio-babies have been treated in the US by using a non-invasive procedure, or even with surgery. I was already trying to prepare myself just in case the Doctor is right and I was doing research on how it can be treated here in the Philippines. And how much money it would cost. I even started to make a list of the people and institutions that I would turn to for financial assistance, just in case, my list included Manny Pacqiao, relatives in the US, government agencies and non-profit organization. But I never stopped praying, and not in a single moment that I doubted God's divine intervention. With my whole heart, I believed that whatever the result of the CT-Scan would be, God would intervene.. Even if it turns out positive, I know that God will make a way for Eon to be treated and that he will turn out fine and grow like every other kid in the neighborhood.
The CT-Scan with contrast would cost Php 9500.00, plus the Anesthesiologist's fee. Eon has to be sedated so the contrast can be administered, thus the need for an Anesthesiologist. We were estimating the total cost to be at around 15,000, that is if there is no complication and we don't get confined or admitted at the hospital. For some, 15,000 is just a small amount, but for us who have been in and out of the hospital for the last three months, it was already so hard to find. My online job wasn't doing so good and my husband's sales is not doing so good either because of the summer season.
I was told that the Philippine Gaming and Amusement Corporation (PAGCOR)also gives medical financial assistance, just like the Philippine Charity Sweepstakes Office (PCSO). I didn't go to PCSO right away because it's just been a month since they gave us financial assistance for Eon's hospital stay and I knew for a fact that they don't give out financial assistance to the same person unless it's been more than 6 months. I couldn't get any information as to what the PAGCOR requirements are for medical financial assistance, I was asking around, I went to the local Barangay and I went to the City Social Welfare and Development Office (CSWDO). There, I was told to go to PCSO because they might know what the PAGCOR requirements are. I decided to go to PCSO and brought my friend, Blondee Resuena-Canizares with me to PCSO office since she knows one of the Social Workers in PCSO, her name is Karen. We told her that we wanted to seek assistance from PAGCOR and asked if they have the requirements, Karen said they don't have it and that you have to go directly to PAGCOR's main office in Manila if you are going to ask for medical financial assistance. However, Karen said that the might be able to help us get another financial assistance from PCSO. I don't know how she did it, but she gave us a set of requirements and when I submitted all the requirements a week later, I was given a Letter of Guarantee from PCSO addressed Davao Doctor's Hospital stating that they will cover 10,000 for Eon-s CT-Scan. I was in tears, I was amazed at the goodness of these people. I have never bought a lottery ticket in my entire life, I even used to think that people are just wasting money by gambling or putting stakes in the lottery, and yet, the institution that organizes these lotteries is the one who has helped us financially tremendously. I made a pact to myself to buy at least one lottery ticket per week just so I can somehow give back and it might also help the others like us who are desperately needing money for medical purposes.
A few days later, we went back to Davao. We had to take the bus because we don't have our own car and My sister was giving birth to his second child so my brother in-law is not able to drive us all the way to Davao. It was only me, my husband and Eon, we left at around 4.30 am so we would arrive in Davao before 8 am. Upon arriving in Davao, we had to go straight to the PCSO office there so the Director in Davao can endorse our Letter of Guarantee from PCSO Gensan. We arrived at Davao Doctor's Hospital at around 10 am and they scheduled the CT-Scan at 3 pm. We were told to look for a Pedia-Anesthesiologist. Luckily there was one in the medical building in the hospital compound. However, when we got to his office, it was closed and there was a note sticking to the door with a cellphone number. I called the number, and it was the Doctor's secretary, she told us that the Doctor is scheduled to go to Manila in the afternoon and might not be available to assist us. We told her that we had to travel all the way from Gensan just for this and she gave me the Doctor's number. I called the Doctor, his name is Doctor Palabyab, and he was kind enough to accommodate us. He said that he had a 7 pm flight to Manila and he can still take Eon in as a patient. We were so glad and thankful that despite our unscheduled appointment, he was still very willing to make time for Eon.
I wasn't allowed in the CT-Scan laboratory. Unlike his first CT Scan in Gensan where I was allowed inside and I was able to take pictures of Eon. I was told it won't take very long, but it has been half an hour since they took Eon inside the lab and I was getting anxious and worried. I wanted to pound on the door and ask them what's taking too long. I knew from experience that the CT-Scan itself only takes less than 10 minutes, I was worried that something might have gone wrong with Eon's sedation.
45 minutes later, the Doctor called me in and said they were done. He informed that they had to double the dosage of Propofol for Eon to be sedated because he just wouldn't sleep. As a matter of fact, he did not sleep at all, even with the high dosage (later I found out that it was the same drug that Michael Jackson used when he overdosed). I was scared, because although Eon was awake, he seemed disoriented and groggy, just a few minutes after I carried Eon in my arms, he went right to sleep. We were asked to stay at the hospital and the Doctor instructed the Resident on Duty to keep a close eye on Eon and not allow us to be discharged until he wakes up and his heart rate stabilizes. I don't know what else they were keeping an eye on but I held Eon the whole time and never took my eyes off him. I was so afraid he would stop breathing. I kept on praying for Eon to wake up soon so I would know that he is fine and so we can go home.
An hour later, Eon finally opened his eyes and we were so happy. We called the doctor and she checked his vital signs, she asked us to stay for another half an hour just to be sure that Eon is ok. At around 8 pm, we were finally allowed to go home.
We can't go back to Gensan that same night because we had to go back for the results the following day. We stayed at an old Family Friend, a dentist, Dr. Leila Tasin and her family, who have been good friends of my parents.
The following day, we went to the hospital at around 9 am and we were told that the results would be out in an hour. We went to have our breakfast first then went back to the hospital after an hour. When we asked for the results, the technician said he already submitted it, but they couldn't find it. We had to wait for another 30 minutes for them to find it and in the end, they decided to make a reprint of the film because they couldn't find it anymore. The mystery of Eon's CT-Scan results.
We took it to Dr. Acosta so she can interpret the results. I had mixed emotions, what if it were positive? Am I really that prepared? Finally, Doctor Acosta called us in and read the results. It was NEGATIVE! I wanted to cry right then and there but I couldn't, I had to keep my composure.. I couldn't explain the happiness I felt, and It was then that I decided to stop looking for the reason why Eon was having seizures. I just accepted the fact that he had a Seizure Disorder and we don't know why. The most important thing is that he does not have Microcephaly and / or Craniosynostosis. My baby is ok.. He is fine.. The doctor said that with the proper medication and maintenance, the seizures will just go away and he will outgrow it.
This happened a year ago, April of 2010. Eon did have a few seizures after that, He had one seizure on May, another one in June, and one on July 30th 2010. But that was the last time.. It has been 9 months that Eon has been seizure free. Although he's still taking his maintenance medicines, I know that in God's time, he will be free of that as well, as a matter of fact, his maintenance of Phenobarbital has been tapered from 30 mg a day to 15 mg a day, to 7.5 mg day, and he's only been taking it every other day for two weeks now and tomorrow will be his last dose, which would then just leave Depakene (Valproic Acid) his maintenance drug.
Prayers are powerful. Never underestimate the power of prayer and the power of God. My friends would tell me that I have been so strong during this ordeal, but I could never have done it without God. It was He who gave me the strength, it was He who saved Eon.. Thank you Jesus, to God be the Glory!
